Posted 8/9/2017 11:12 AM (GMT 0)
Denver- Whats interesting is that the concept of longterm antibiotics isnt exactly foreign. The CDC likes to perpetuate this myth because they know most people are looking at Lyme in a vacuum and rarely do people have the knowledge or experience to know that longterm ABX are commonly prescribed across the medical community for many different diseases for everything from acne to tuberculosis. CDC acts like this concept is so foreign and unheard of in medical practice, but the idea is basic medical common sense. If you have a pathogen that is known to be vulnerable to ABX that is causing a disease process, in most all cases you would continue to treat until the patient is better, but the CDC has created all these exceptions when it comes to Lyme specifically. They have blurred the lines so much that the true endpoint of therapy has become obscured, and all we can go on is our symptoms and how we feel. However the CDC readily admits that other bacterial pathogens that are vulnerable to ABX can require very longterm and even open ended treatment. For example, the recommended guidelines for chronic Q-fever, which is a bacterial pathogen that can be tick borne, is up to 14 months. Same for Brucella, which can also be transmitted by ticks. And of course syphilis is also acknowledged to require longterm antibiotics, and Lyme being a spirochete as well, this should follow for Lyme too. CDC/IDSA loves to talk about how dangerous and unproven longterm ABX are but their guidelines recommend them for other potentially tickborne and spirochetal bacterial pathogens, but for some strange reason they castigate the idea of doing this with Lyme. I agree with you that there is a lack of evidence specifically regarding longterm ABX use for Lyme specifically, but there is a wealth of information about longterm ABX for other similar conditions, and most of the research we do have relating to Lyme in just the acute form, is that it is proven to be susceptible to ABX. So when I say evidence based, I just mean more consistent with the information we do know, which is not to say that we even know what the best treatments are. Sometimes the evidence is wrong, but its all we got to go on.
Girlie- I agree. The forum is open to people to express their honest experiences whether they be ABX or herbal. I'm definitely not advocating any form of censorship. The forum only reflects what the people write. It is what it is. People report getting better on herbals which is great. I'm just saying that because there is so little research being done to explore the effects of longterm ABX for Lyme and very little published evidence of longterm ABX, and very few resources to study their effectiveness, people are forced to rely on anecdotal evidence to fill in the blanks. I think these forums highest and best use would be to fill that research void and provide that type of anecdotal ABX experience and advice that we can't find elsewhere. I know this is wishful thinking, utopian even, but this is the type of information I find myself looking for the most and I personally believe would be the most helpful for the most people. Statistically, more people are treating chronic Lyme today using longterm ABX than any other method, but that experience and body of knowledge isnt being reflected on the online forums for some reason. I know it's out there, it just doesnt make its way onto this or other forums. We can only speculate why that is.
It's great to be able to come on here and commiserate with others and realize we arent alone. It's also nice to learn about adjunct therapies like detoxing, and yes even to hear about herbs from time to time if thats what some people are using. But ultimately we are all looking for a solution. I just personally feel that if there were more advice and experience available regarding the solution that most people treating Lyme are pursuing (ABX) then we could collectively improve many peoples treatments and outcomes. There already is some of this being discussed on HW, which is great, although most of it seems to be in the archives, and less and less of this type of info being posted more recently. I am not advocating censorship either way, I am just voicing my thoughts that this is the most helpful information here from my perspective.
This isnt to criticize the forums or the users for the info they do provide or how they treat, but it's more of a 'what if' proposition. What if we could add a layer of evidence to the ILADS position that longer term treatment is beneficial and what if we could demonstrate through consensus that if we have a bacteria and we are getting better using antibacterials over time then maybe longterm treatment is warranted and not some far out quack concept that it's perceived to be by so many. I'm not saying we should try to censor or make the forum something it is not. Most people come to ask questions and they are not thinking about how their posts would contribute to some imaginary research project. I get that. I just wish we had more solid answers for them and everyone else, and that can only come through consensus. We need to make new guidelines, and it just frustrates me that there is so much unknown that we don't have enough evidence to back new guidelines up.
The CDC/IDSA has 2 main arguments they repeat over and over about Lyme, and each of these 2 arguments rely on the other. First they say that Lyme cant be chronic. (I think we have a very clear consensus on this board that it can). 2nd they say longer term treatment doesnt help, and I just wish there was more consensus to refute this claim. Because they turn around and use it against us saying if it were chronic, then longer therapy would help. Its really ideological warfare and we have to fight using their weapons and their yardsticks to make any progress to change things. I just feel like when you boil it all down, we want to be able to say that treatment failures arent inherent to long term ABX, and the problem is finding the right combination of ABX through trial and error. Wouldnt it be great if we could collectively provide that trial and error and save others the trouble. "X abx is what my LLMD prescribed and it worked for me." "me too" "me Three" Okay now we're on to something. Now we're gaining momentum. Wishful thinking I know.
We're all different with different coinfections. SOme of us don't even have Lyme but something else. May not work for everyone but at least there would then be some common path being worn, that adds up with science. I wish we could have the common path of a science based solution instead of the common path of 'boy Im miserable and I feel like crap. What does this new symptom mean?' Perhaps this is unrealistic and even impossible, and I am probably expecting too much from a simple forum where sick people come to as questions seek answers and share their honest experience with Lyme, but I feel it has the potential to fill in the blanks of science and pick up where research left off, and personally this is what I would like to see more of.
At the end of the day we're all on the same team no matter what treatment modality we choose, and I certainly don't want to create any division at all, or discourage people from honestly sharing their experiences and their treatment perspectives, so I hope people dont take it that way. I just feel the need to speak up for the ABX side sometimes, because thats my perspective. Treating this disease is a lot like religion. You have to have a lot of faith in whatever treatment you choose. You have to pick an altar to sit in. But as Buhner and others have pointed out you can use both herbs and ABX together, but I personally just want to simplify my treatment as much as possible and focus completely on whats most effective and efficient for most people. Maybe I am oversimplifying a complex disease, but I don't want to treat like a statistical outlier or complicate things any more than necessary. Lyme as we all know is complex enough as it is.
Multi- I can certainly understand where you are coming from. For people who cant afford LLMD's or ABX, herbs are better than nothing, although the herbs can be quite expensive too. I am glad to hear that you consider yourself better and you are getting your health back. Some people simply can't tolerate ABX. Some people are allergic. For some the herx can be too much to bear. This isnt to discount your approach or slight your treatment, but you had to pursue herbs as a chosen alternative. It's great that you found success, but ABX are still the standard approach used by most people to fight chronic Lyme today. There are many LLMD's all across SoCal using longterm ABX and in Mexico as well depending on how far south you are.